Children like these

Joe Saxon

Sometimes I have to admit that my life feels a little like a work of fiction, which you could only read about in novels. Things happen that don't happen in real life, and definitely don't happen more than once in any given family.

You might get to the end of the novel and think, well that was a good read, but a bit far fetched really. Well, that is how I feel about my reality sometimes. People’s reaction to the quick synopsis of my story shows it is unexpected.

I have two children with Cerebral Palsy. They are affected in totally different ways, and acquired their brain injuries in totally different ways, through completely different sets of circumstances. My son’s was an average story. I developed pre-eclampsia; my baby suffered and was born too soon. The poorliness of the mother resulted in a brain injury. So from day one, we knew there was a high chance of disability.

As he grew, the phrase 'children like these' became like a mantra of the professionals around us, from the first specialist health visitor we saw, who gave us a very grave tale regarding the future of our son, to the physios and the paediatricians.

One comment that springs to mind is, 'Children like these often struggle with communication'. My son has an opinion on many things that he will tell you, and you will have to listen. I often hear 'Mummy, are you listening?'. I should be grateful that 'my child like that' didn't struggle with speech, but as he recounts to me the happening of the latest episode of ‘Power Rangers Ninja Steel’, I glaze over.

I was told that my child may never walk. I was not told that he may be able to do it, but would not want to, because it was too hard and not efficient enough. I never thought he may not be able to use a pen, and no one thought to tell me that one. They were too busy telling me how 'children like these' are hard work, and how life would change.

My daughter was born without the drama of her brother, and grew brilliantly. At the age of two years and six months, she suffered a Major Ischemic Stroke. It took them three months to diagnose, and in that time we had seen her move and behave almost normally. The conversation with the consultant was more along the lines of, 'well according to the scans she shouldn't be able to do that'.

There was no 'children like these', because 'children like this' just don't exist. She was the one in every 100,000 children who have a stroke. The thing you could never imagine happening had happened, and the damage it seemed at the time had not had a major effect. So we would have to watch and wait. The fiction, the articles you read about what happens to others, happened to me.

Finding out about how your child is affected by Cerebral Palsy is a case of watching and waiting to see how they develop. What can they do? What milestones are they missing? Online reading makes for miserable reading. Their life expectancy is shorter. Their life chances are limited. Many people make many assumptions about my children. 'Well at least she is OK,' has been said a lot to me. What do you say to that? No she is not OK, or actually, both my children are perfect the way they are. They prove themselves to be fighters every day.

Everyday my son battles against gravity, burns calories sitting and achieves great things at school. He can make a person see the best in the worst situation, and he can hold an intellectual conversation that 'children like these' are told can’t.

My daughter, who seemed relatively unaffected, struggles to understand any concept of numbers, lives in a reasonable amount of pain as her muscles grow, and hides as many of her differences as she can. She has lost much of the use of one hand, and her right leg does not behave as we would want it too. She has fits, but no diagnosis of epilepsy.

She has a different brain, and I suppose the only 'children like these' she fits is that she finds getting off to sleep very difficult, and needs regular medication to help with this. However, she is incredibly creative. She writes beautiful stories, and can come up with really creative solutions to problems. She is very social, and very beautiful (in my biased opinion).

As I write this, I think about my belief in the power of words. As words are spoken over our children, be they with or without disability, they grow towards the expectations made of them, be this limiting or empowering. I believe a word spoken over a person can bind and affect them for the rest of their lives, whether we think they've heard it or not.

Therefore, each and every time I have been told 'children like these', I have decided that we won't be bound by those words. If my child grows and cannot walk then we are OK with that, but he is not a statistic just one of a group. He is an individual, affected by his disability in an individual way. His legs work differently to other wheelchair users with the same condition.

When they can't find a reason why my child can do something that 'children like these' don't, I smile. I've been known to laugh at the consultants. Our children are not a group, they are individuals. Let’s stop deciding their future before it’s happened. Let’s enjoy the highs of the journey, and be there for one another during the lows. Disabled or non-disabled child, let’s not anticipate the future, let’s not decide or limit our children by what we have seen before. Let’s imagine great things and let’s see their potential, because there has never been a child like mine before and there never will be again.

Life did change beyond all recognition when my children came into this world. My life is harder than it was before, but isn't that true of most parents? Raising children is not easy. But the rewards are high. The laughter is incredible, and when we prove someone wrong, when we do what can't be done, we punch the air and say ‘In your face Cerebral Palsy!’.

Maria is a new Family Fund Blogger. She lives with her husband and three children, Sam 10, Beth 9 and Ollie 3, in Plymouth. She is a full time mum/carer.

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